There is no doubt, in his mother’s eyes, 10-year-old Nate Simon is indeed great.
Nate was born with Down Syndrome, and the moment Nate’s mom, Holly Simon, held her son, she knew his life would be one to celebrate and treasure.
“Within minutes, I whispered into Nate’s ears, ‘I will protect you, I will celebrate you, for the rest of my life,’ and it’s been a great journey ever since,” she said.
But the doctors and nurses in the delivery room didn’t look at it the same way. Simon says when Nate came out, the room became silent and everything seemed to go dark.
“The doctors and the nurses stopped their eye contact with me, and immediately I could hear their sorries,” Holly said.
Nate is Holly and her husband Dan’s fifth child. All of them medically normal. So when doctors gave them the grim diagnosis, naturally the Simons burst into tears.
Then Holly’s mother walked into the hospital room.
“And I said, ‘Mom, our son has Downs Syndrome.’ And she said without missing a beat, ‘So what? He’s alive isn’t he?'” Holly said. “And within that moment my life changed, my mom gave me the best gift I’ve ever received in my life which was acceptance and love and the fact that it is what it is and I have the choice on how to handle that. I chose, literally within that second to embrace and to celebrate everything about him, he’s magical.”
And Holly was off and running. It was like someone had given her a shot of adrenaline. And she began her mission. As she puts it, to erase the sorries and bring on the warm congratulations and teach people to focus on what their special needs child can do and not what they can’t do.
Soon after Nate came home from hospital, some 10 years ago, Holly Wear Bags was born.
“From my dining room table, with my first sewing machine and a manual on how to do it, I created this small little business,” Holly said.
That small little handbag business grew like crazy. And with every sale from every hand made purse, Simon gave a percentage to Down Syndrome research. Now, her annual event in November, called HollyDays, has over 900 in attendance. But Holly didn’t stop there.
“I felt there needed to be a change. I felt the change needed to be brighter, louder, um more exciting and to be engulfed in celebration,” Holly said.
So a year ago she took it up a notch by creating her own foundation, called I Am Who I Am.
“We literally sat at my kitchen table and came up with I Am Who I Am, which is always how I’ve lived my life. I might be a little different but more like you than he is not,” Holly said.
“Amazing you can meet her just once and you know just from talking to her one time know how energetic she is, how passionate she, we joke, I call her Redbull and the 5 hour energy drink rolled up into one,” said Holly’s friend Jemenda McCoy
The foundation’s most recent fundraiser was held at the Oak Lawn Children’s Museum. She called it “Let Me Show You My Ability, Not My Disability.” Two hundred families showed up.
“But I think the thing that is so great about I Am Who I Am is that it’s not limited to downs syndrome, it’s limited to all children and all parents of differently disabled children and so I think that it is inviting and so even people who have “normal” children can come and feel that sense of community and feel that sense of love that just resonates whenever you’re at one of those events.
Holly has recently partnered with Ray Graham High School where special needs students package and label her jewelry.
They will eventually help in the Baby Blanket Mission, congratulatory blankets Holly hopes to put in every hospital in Chicago by 2014.
“I will tell you Micah, this feels so right, this is my walk, people ask me all the time how do you do that you’re raising four teenagers and a special needs child. I constantly say what is my choice, this is my life.
Holly Simon. She’s one of Chicago’s Very Own.